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Sunday, August 23, 2015

Still hanging...

I've been playing phone tag with the genetic counselor. Well, mostly it's been me leaving him messages and then the one time he called me back, my phone must have been in a dead zone because it didn't ring, and then suddenly had a voice mail with no missed call. And of course it was at 4pm on Friday so do you think the guy answered his phone when I called him back? Of course not. His voice mail said, "There are some results I want to discuss with you." which I assume and hope means that there is more to the results than "normal" and that it's not another "well, we found XYZ but we don't know the significance of that, if any" because I'm so over those.

My mission in life this week (aside from taking little girls to appointments) has been to purge all of the excess clothing out of our house. I'm pretty sure that clothing is reproducing in dark corners of our house because that's the only way I can fathom how we have the amount of clothing we have. I went through some boxes of clothes yesterday and pulled out the things that will fit the little girls now, and bagged up a LOT of clothes that we hauled off to a clothing drive. It felt pretty awesome to let all of that go.

Letting go has been a bit of a theme for me this week. Letting go of material things is the obvious, but there has been a lot of figurative letting go too. Somehow, the literal letting go of things seems to smooth the rough edges of the figurative letting go. Letting go of the stuff that clutters up our space is more difficult than it seems like it should be. Nobody likes to be surrounded by clutter, yet so many people are. Everyone has their various reasons for the clutter. I don't have time to take care of it. I'm not sure what to do with all of the stuff. I don't have room to put it away so it sits in a pile instead. I'm saving it for _________ (fill in the blank). It was given to me by someone I love for a special occasion and I can't bear to part with it. Whatever the reason, there has to be a tipping point when the clutter becomes more suffocating than the reason for hanging onto it.

Clearing out the clutter is both exhausting and liberating. Letting go of the piles of stuff and taking back your space is empowering. The same goes for the figurative letting go. The figurative "clutter" of life comes in many forms and is burdensome. Taking on too many emotional and psychological burdens wears heavily on mental and emotional health. Letting go of figurative clutter is every bit as difficult as decluttering personal space. Maybe more so, since it can be hard to even recognize the figurative clutter in our lives. Sometimes we don't realize how burdensome a relationship, thought, idea, or habit is until we remove it from our lives and feel lighter and freer.

The week ahead of us, much like the last 3, will be busy. It will be packed full of appointments (we have 5 medical and a couple of other appointments scheduled) and all the usual craziness as well, like piano lessons, early release on Wednesday, scouts, youth activity, a home study, and prepping for one of the kids' birthdays this weekend. I simply cannot juggle all of those things AND all the other things I need and want to get done, so some of it will just have to be let go. It's easier said than done, but no matter how Wonder Woman I think I am, I can't do it all and this week, that will just have to be okay.

Saturday, August 8, 2015

Sure, go ahead and leave me hanging

Words escape me to describe how this week has been. The usual choices of "insanely busy" and "exhausting" and whatever else I would normally say just don't do it justice. I won't even try to explain it all but there are some important highlights.

1. We saw our former neurologist, who left the hospital-affiliated practice a couple years ago. I decided it was time to follow her, because I like the way she thinks, and I like the approach she takes with kids like Raya. The results of that appointment are that we are finally having the sleep study done that the hospital neuro clinic was supposed to have done a year ago and never called me back to schedule, even after I left multiple messages. We are also having a huge list of labs done to check things we haven't looked at in a couple years, and several things we've never looked at at all. We also have a referral to a naturopath in the area who may be able to help us look at things in a different way. We will be following up with neuro in 2 months, and hopefully by then I will have actually found time to take Raya to the lab to do the blood draw.

2. The most recent genetic test results came in. Not because the genetics office is on top of things, but because I knew the results should have been ready by now so I started calling them until they acquired a copy from the lab. (These tests were some that were ordered when Raya was a baby, and I only found out in February of this year that they were never actually done back then when they were originally ordered.) The genetics counselor called me back Tuesday to tell me that they had gotten a copy of the results and that it looks like there are some things there that may explain some of Raya's symptoms. Then of course, he followed that with, "But I can't give you any specifics until the doctor is able to review the results. We'll call you back when he has gone over them." And now it's Saturday, and I didn't hear anything back. But don't worry, Mr. Genetic Counselor and Geneticist, it's not like I get butterflies in my stomach when I think about the possibility that after 5 1/2 years, we might actually have a name for whatever underlying diagnosis has eluded us thus far. So yeah, just leave me hanging for however long it tickles your fancy. I don't mind.

3. We had a consultation with the orthotic specialist this week. It probably should have happened a couple years ago but it was one of those things that took a back burner to the digestive stuff and unless you know what you're looking for, most people wouldn't recognize the problems with her gait. The orthotist confirmed that I'm not imagining things that aren't there and that she does need orthotics and physical therapy for her gait. Pending insurance approval, we'll be able to pick up her orthotics and then she can start learning to walk in them. She has made incredible progress in regards to her cerebral palsy, but there are still things that we need to work on correcting in order to prevent long term dysfunction. Orthotics and PT will help.


There were more mundane things like our garage freezer thawing out overnight, forcing me to clean it and bake 6 dozen rolls yesterday so I didn't have to throw away the thawed out dough. And Donny's car getting backed into by one of his friends. And the child who woke me up puking her guts out in the bathroom at 4 this morning. And holy hanna has it been hot this week! When I was picking Raya up from school on Wednesday at 9:40 in the morning, it was already 109 degrees. When I picked Ashtyn up from school at 4:00, it was 116. Oh, and we were asked to speak in church tomorrow and I've been so busy all week that I haven't written my talk yet, and I'm so tired now that I can't stay awake, let alone form enough coherent sentences to write something worthy of sharing over the pulpit. I hope a lot of people are out of town or sleep past their alarms. I had a dream a couple nights ago that I was sitting in church and realized I had forgotten to write my talk so I had to wing it. It was an unpleasant dream.

Aaaaanywhoo, we have had a difficult, exhausting, trying, emotionally charged, busy busy busy week but I have felt over and over again that God is making me equal to my tasks and we will survive. We have had the pleasure of a couple nice thunderstorms this week, which I always feel are a gift from God in the form of a break from the REALLY hot weather.

Sunday, August 2, 2015

Week 1 of kindergarten: DONE!

The sun was very bright, hence the squinty faces and red eyes.

Raya's first week of kindergarten is in the history books! Due to a lot of hard work by a lot of people, everything went about as smoothly as it could have.
Sunday afternoon, we packed everyone's backpacks with the rest of the school supplies that I had bought late Saturday evening. Normally it would give me anxiety to wait that long but it came down to a choice between taking a bunch of kids school shopping with me in the middle of the day when everybody else and their kids are school shopping, or waiting until Saturday evening to do it by myself. One by one, I sat down with each kid and checked off everything on their lists. (Except for the Kleenex. Had I bought the number of boxes of Kleenex requested by each kid's list, we would have been carting about 15 boxes of Kleenex to school on Monday. Ain't nobody got time fo' dat.) Sunday evening, we continued our tradition of having Donny give the kids father's blessings to help prepare them for the upcoming school year. 

Monday morning went pretty smoothly. The elementary school starts 40 minutes before the middle school, so we got the younger kids ready to go, had family prayer, and I took them to school, and then Donny took Ashtyn to school when it was time for her to start. It took some coaxing to get my too-cool 5th grader to ride to school with me instead of on the bus. Meaning I had to pull out the "because I'm the mom and I said so" card. He even asked me to drop him off before we got to the parking lot so he didn't have to walk with us. HA. There was nowhere to park since a lot of parents walk their kids to class on the first day, so we had to park really far away and then we lucked out that the teacher on bus duty hadn't locked the gate yet so we sneaked in that gate instead of having to walk all the way to the front of the school. I waved to Cole and sent him off to his classroom, and then we met Kaida's class halfway between the playground and classroom. She's not too cool to hug her mom in public yet so she gave me a big hug, gave Raya a big hug, and happily joined her class on the walk to the classroom. She LOVES school! Once we had deposited the first 2 kids, Raya and I headed to her classroom. The kindergarten wing is madness on the first day of school. I walked her into her classroom and helped her get all of her supplies onto her desk. We were introduced to Raya's aide and I told her a few quick things but pretty much all the kids' parents had walked them to class too so it was really packed and chaotic. I snapped a picture of her at her desk and then had to go to the health office to drop off medications and fill out forms.

I thought the trip to the office would take me about 5 minutes but it ended up being more like 30. I had 3 medications for Cole and 2 for Raya and each one required its own form. I try to make things as easy as possible on the health aide, especially on the first day of school. Her office is complete chaos pretty much the whole first week and I didn't want to add to it.

I spent most of the morning talking to her aide and giving her a bit of background on Raya. We got to go on a tour of the school so that the kindergartners would know what to do when it was time for lunch, and where to line up in the morning. After that, it was lunch time. Raya gets to sit at the peanut-free table. I kind of have mixed feelings about segregating kids because of a medical condition but for now it's the best thing for her. We have a really good plan worked out for lunchtime at school that I think will help improve her eating habits (i.e. help her develop a habit of eating). Her aide has done great with it all week so far and I think it's going to be a great system for us, even if it needs tweaking down the road a bit. 

After lunch, the kids got to play on the playground for a few minutes. Raya was doing great up until that point as far as tolerating the heat. I don't know what the temperature was during lunch recess but when I took her home at around 2:00, it was 110 degrees, so it was probably at least 105 at lunchtime. She did great until it was time to line up. Being the first day of school, sorting out 3 kindergarten classes proved to be a bit of a challenge. Not all of the kids knew their teachers' names yet, and some of them were off in la-la land, so it was like herding cats trying to get them lined up in the right place. We ended up standing outside in the sun for about 10 minutes trying to get all 27 of the kids together. After about 5 minutes, Raya walked over to where I was standing and leaned on my legs and told me she was "so super tired" and her face was getting red and splotchy. I took her backpack off and carried it for her for a few minutes and showed her aide that that's what she needed to be on the lookout for when Raya is outside, and that when she gets like that, she needs to go in and cool off ASAP. After everybody was gathered up, it was time for art class. I thought the regular classroom was a zoo but art class was much more difficult. The desks and chairs are made for big kids, not kindergarteners and they were still a little hyped up from lunch and recess. I think the art teacher was tired by the time we left his classroom 45 minutes later.

After art class, we headed back to the classroom. The first day is always crazy but they still managed to do a couple worksheets and learn the school and classroom rules. I hadn't necessarily planned on staying the whole day but it was for the best that I did. It gave me an opportunity to get a good feel for how the flow of their day will go, which helped me decide on the best way to go for her feed schedule and bathroom schedule. Before Monday, I'd had things planned out one way, but once I spent a day at school, I realized that it would be better to do them differently so I'm glad I stayed. I pulled her out of class at 1:30 as planned, and the timing of that worked out perfectly because that's when the class leaves for afternoon recess and snack. They walk past the office on the way to the playground so she can walk with them and then meet me in the office. She was a little bummed to not be going to the playground with her class but decided that was okay because she was really tired and her legs and feet were tired and hurting by then. We dropped off some papers to Kaida that I hadn't finished filling out by the morning and then stopped by the health office. That was when I found out about the existence of the "health care plan" that apparently is redone every year and has been in Raya's file every year. I had never been told that one existed and always just assumed that everyone was going off of the information I had added to the IEP. Turns out that someone from the district (a respiratory therapist whom we have met once. Ever.) writes all the care plans for the kids who need them and wrote Raya's based off of information from 2 years ago without contacting me or anyone else to ask for updated information. That was a bit of a shocker, especially considering all the legwork I had done at the end of the year last year to get signatures and forms filled out BEFORE the IEP meeting. I am still baffled as to how that person could have thought it was okay to use 2 year old information without contacting anyone and asking for updates but the information has now been sent and hopefully the new plan will be accurate. After that, we left the school for the day. She was thrilled as could be to officially be a kindergartener and couldn't wait to go back on Tuesday!


One thing I realized while I was there was that it was time for me to let go of control a little bit and teach them how to disconnect and reconnect Raya's pump. In the past, if she needed feeds at school, I just had the pump programmed on the interval setting and had them leave her connected to it the whole 3 hours. I had planned on having the aide disconnect her after her second feed of the day but I hadn't planned on having her disconnected between the first and second feeds. After going over the schedules though, I realized that that's what needs to be done so I took a deep breath and turned that responsibility over to the aide and health aide. I went in Tuesday morning and gave the health aide, Raya's aide, and 2 other aides the rundown of how to connect and disconnect feeds. I don't think most people can really comprehend how difficult it is to turn that responsibility over to someone else. In all of her life, I can think of 2 people aside from Donny and me who have ever connected and disconnected Raya's feeds outside of the hospital. I have always felt like this was a situation where the saying "too many cooks spoil the broth" applies, meaning that I prefer to have as few people as possible involved in touching her pump and tube. I knew eventually we'd have to let other people help with it and I could have just opted to have them leave her connected for the morning, but as long as the instructions I gave are followed, this is the best thing for her. I heard that she was quite helpful at telling them what to do when they were taking care of her pump the rest of the week so I think they'll manage. :)

Tuesday was one step closer to independence. I still had to park and walk her to class, but I walked her to where her class was lining up and then I left. I didn't go to the classroom or anything. Then I had to head home so I could take Ashtyn to school. Let the record show that no tears were shed when I dropped my baby off to her second day of JUNIOR HIGH. I am way too young to have a kid in 7th grade, I tell ya. 



I did have to come back about an hour later so I could meet with the aides, but that was all the contact I had with her that day. She looks WAYYYY too grown up in her cute little uniforms!
bright sunlight: 1, Raya: 0
Their school has a pretty liberal uniform policy, thank goodness. She was NOT excited about the clothing options but she's getting used to it. She made me laugh so hard after school. As we were pulling into the garage, she asked me, "I can wear my collar how I want when I'm not at school, right?" I told her she could and she said, "Oh good. I like it this way because this is like a vampire."


Wednesday morning, I didn't even go past the gate. I told Kaida that it was going to be her job to make sure that Raya got to the right place to line up. I fixed Raya's pump backpack, put her school backpack over the top of it, and sent them off through the gate. Watching them walk away hand-in-hand melted my heart. 
I walked over to the other gate so I could see that they got where they needed to go and watched them walk up to Raya's line. Kaida gave her a big hug and then went to line up with her class. I walked away with a smile on my face, knowing that everybody was where they needed to be, and feeling a little bit giddy over the prospect of having a peaceful, quiet day at home with Piper. I think Piper was pretty happy about it too.

Raya hit an exciting milestone on Wednesday. When she came home from school, she had managed to drink more than half of her water! Within another couple of hours, she had finished the whole bottle. Eight ounces of water in one day was a new record for her and I made sure to tell her how proud I was of her and what a great job she did. We also sent the picture to her feeding therapist who was about as excited as I was.

Wednesday night was a little rough. She went to sleep at the usual time but woke up at 10:30 and was upset because she had fallen asleep without snuggling with me first. I told her we could snuggle on the couch for a little bit since I knew her pump would be going off before too long and I'd need to get up and turn it off anyway. We laid down on the couch and I fell asleep. At 3:45 am, I woke up to find that she was wide awake and watching Jake and the Neverland Pirates on Netflix. She didn't know how many episodes she had watched and was not happy with me when I turned it off. I gave her a second dose of her sleep meds and got her bedded down on the floor next to my bed, hoping that she would get to sleep a little bit longer that way. She still woke up before 7:00 Thursday morning and was a total zombie. I would not have been surprised to have gotten a phone call that she was asleep and I needed to come pick her up. They said she was pretty subdued all day but she stayed awake. She also stayed awake on the drive to feeding therapy after school, and the drive home from feeding therapy. I really do not understand how her body can keep going and not ever slow down and relax enough for her to just fall asleep.

Friday morning after the kids had all been dropped off at school, Piper and I went to our last summer movie. It was kind of funny taking a 17 month old to a movie, but we had fun. She could care less about the movie. She was only interested in the popcorn and sitting in a big kid seat all by herself. We left a few minutes early but she lasted a lot longer than I expected her to. 

We picked her up Friday afternoon and she was bouncing off the walls but very happy. She was so proud of her construction paper mouse headband!

And I tried my best to pretend that I didn't hear the secretary call the maintenance guy on the walkie-talkie and ask him to go clean up after the boy in Raya's class that vomited about 5 minutes before Raya came to the office.  {hashtag: Mommy is a germophobe}


Overall, our week went well. I am feeling 100% justified in our decision to pull her out early every day, based on how she did once she got home each day. She does a great job of holding herself together while she's at school and then falls apart when she comes home, but she did a little better than I thought she might, so I think what we're doing is perfect for her. She kind of wore me out over the weekend. She was releasing all the pent-up energy she'd been holding in all week. She literally talked all day on Saturday. Mostly to herself and her toys. She's been much more emotional all week than she normally is, which I'm sure is due to the transition, but she asked me several times today when she could go back to kindergarten so I think she still liked it. :)
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